Please be prepared. This is a VERY long post.
Since our move to New Jersey, something has been quite "off" with my kids. I have 2 girls: Scarlett (age 3) and Sienna (almost 2). Since we have left NM for NJ my kids have literally been sick or had something wrong on average every 2 weeks. That is no exaggeration. Every 2 weeks (averaged out) there has been an ear infection, croup, strep throat, scarlet fever, a cold, a cough, another cough, and then on top of that another strep throat. To say the least IT HAS BEEN EXHAUSTING. In the midst, I am moving to a new place and doing all this on my own. My husband just started what is an overly damanding job (we had no idea it would be so intense). On top of the sicknesses, my daughter Scarlett starts literally within a few days having some very very scary things happen. This is the best I can do to make a long long long story short.
Scarlett has always had a few things about her that were "unique" as a baby and toddler. But nothing I would call a therapist about. She has always been super happy, full of energy and extremely smart. I have loved every single second of being her mother. She has a mind like no other 3 year old I have ever met. Constantly building things, figuring things out and interested in a huge variety of subjects. Much like her dad.;-). She is brilliant, and very observant. Brilliant as in she knows the planets, is learning to write and read at age 3. Anyways, we have had a few concerns since she was born like she hasn't had great eye contact with people, socially she will just drift off into her own world sometimes, and she has obsessions with patterns. We went through a small biting phase. Other than a few things that we have noticed she has been a happy, well adjusted kid. Until we moved to New Jersey.
When we moved to New Jersey, Scarlett's personality changed alot. The first week we were here she had croup really bad. Then some strange cough that would not leave. I figured that all the new people, places and things were stressing her out. She became mean and bitter to her little sister Sienna. Scarlett and Sienna have always had very very different personalities, but Scarlett had never treated her quite like this before. She started attacking her, biting her, hitting etc. It was really stressing me out because on top of this crazy sibling aggression my kids can't stop getting sick. After the croup, and the cough we traveled to Utah to visit family. A few days before we left Scarlett contracted scarlet fever (strange irony). The doctor said after 2 days of antibiotics she would not be contagious and we could still go to Utah. We go on our trip to Utah. While there, she seemed fine. We saw family, and did not have any major issues except for Sienna getting 3 ear infections within 4 weeks. We had tried several antibiotics and nothing was helping my sweet Sienna. We came back to New Jersey. When we got home I immediately took Sienna in to her pediatrican who looked in her ears and said they were terrible...I needed to see a specialist. The next week we saw an ear, nose and throat doc. The doctor told me Sienna needed ear tubes. The next week she got the tubes. Sienna is a very sweet, quiet little girl. She is very nurturing and cuddly. I always just thought she was not saying alot of words because of her age, but I did not realize that she had not been talking mainly because she hadn't been hearing right! Poor baby. After the tubes were in, her little personality has changed a ton! She is such a gabber now, full of words and opinions. It's like within a few weeks she has grown from a baby to a toddler.;-( But I am so happy that she isn't in so much pain with her ears now. Now back to Scarlett......
Within that time Scarlett started to change a bit more each day. Some noticeable changes were: stacking things constantly, serious sibling aggression, OCD tendencies, only wearing certain colors black and red, and only wanting to watch scary movies and coloring only with black. More OCD type behaviors came up and in an intense way. Scarlett has always had her "interests," but her interests became obsessive....like wearing a cape everywhere, carrying snakes around or other reptiles etc. (It is a long list). I had to take her out of preschool because she had major seperation anxiety, and did not want to leave the house. Since she had had scarlet fever she had noticeably changed. She would hide her shoes so that we could not find them and it was near impossible to leave the house. She would hide under her bed so that she didn't have to leave. In Utah I noticed that she started to make some strange, scary faces. Some family members noticed these strange faces, but nobody really said anything. Again, not enough to take her in to get help but being her mom I definitely saw these changes, and they were starting to really worry me! I started to think she may have something like Aspergers Syndrome, but I just wasn't sure. I started to think about bringing her to a behavioral pediatrician to possibly get it checked out, because although she had some interesting behaviors going on she was still my little girl-sweet in a lot of ways and super smart.
Justin's sister came into town for a day and we happened to (of course) get sick again with the flu. I swear we are constantly sick! Meaning the girls and I, not Justin lol. No matter how much I clean, sanitize or how healthy we eat the sicknesses go from one kid to another and never leave! About 4 weeks after being home from Utah I started to share some of these behavioral changes with my mom. As I started to open up, they became more intense. In the midst of the changes a new cough came and Sienna developed a 104.8 fever that we could not break. During the few days that this new cough came on Scarlett became literally violent. I mean scary. Attacking her sister, screaming, hitting, biting, pushing you name it. Her OCD things became worse and worse. She started to do strange crawling movements and flipping on the floor where she couldn't stop. She did not want to leave my side or the house. Her strange faces doubled. It was very very odd and very hard to explain unless you saw it. That week I literally did not want to leave the house because it was so scary. In the mean time Sienna is terrified of Scarlett hurting her so I have to constantly hold her and she is sick.
So we go the doctor. He tells me Sienna has strep throat. He couldn't believe it seeing how sick we had been a few weeks ago, and then before that how many times my kids have been sick. I ask him to check Scarlett for strep. He looks in her throat and says she doesn't have it. While we are in his office Scarlett starts making the strange faces which includes sticking out her tongue over and over again (15-20 times) and then stacking his towels. He asks me about her behavior and we talk for a few minutes on it. He refers me to a specialist. We leave his office and I have this nagging "mommy" gut feeling that something is seriously wrong! I think about it and realize he didn't even swab her! I needed to know if she really had strep throat or not. So I make an appointment with another pediatrician.
The next day we go in. Within the 24 hours from Pediatrician A to Pediatrician B Scarlett is out of control. It is like she has lost her mind. It is so scary. I had been taking videos because it is so severe. Justin is also extremely worried. And if you know Justin, nothing worries him! So if he is worried...this is serious. A hard part about this is that he works SO much he doesn't really see it all. So I have to video it. Next day comes we go to Pediatrician B. He swabs Scarlett and says that her strep culture is positive. THIS. NEVER. ENDS. While in his office....the "faces" start again. He asks me if she has been seen for TIC disorder. I have never heard of it. So he watches her and explains to me calmly that she has a "tic" disorder in her face...or tourrette's syndrome. HOLY CRAP! I should have known. It makes sense. Several faces she cannot control. Most of them happening in social situations. I cannot believe all this. It is one thing on top of another. We leave his office with a prescription for amoxycillin for Scarlett. So now they are both on it again. In the mean time I am keeping in touch with my mom and basically I have convinced myself that Scarlett has Aspergers, or something similar because it is the only thing her symptoms fit into! After that 2nd doc appt things got worse and worse. I mean like crazy. So crazy it hurts me to type it all. I have a list long of 5 pages of things that were happening. I was not leaving the house and I was determined to find a specialist who could HELP us! Here were Scarlett's extreme behaviors that started mainly after the scarlet fever and then became unbearable when the strep throat came (most of this in a few day period at it's most extreme) :
OCD tendancies. Examples: writing the same letter 50 plus times, crawling and spinning out of control for long amounts of time (if stopped will freak out), stacking and layering everything over and over again (blocks), scribbling the same things over and over, terrified of germs in her bed, major TIC disorder in her face (acute and sudden onset within days) to the point where she could not control it (this was the scariest for us), severe seperation anxiety, could not be left without me, overly agressive towards her 2 year old sister literally attacking her and growling, picking at her face all day long and skin compulsively, picking at other people's hang nails, when in social situations or nervous her tongue or a strange face is made and cannot be controlled, serious sensitivity to her clothes being itchy or too hot, and sounds too loud, acting animalistic almost like she was 2 or younger again, babbling, acute onset of clumsiness, biting, over hyper active....like beyond what a normal "hyper" kid is. Peeing her pants, refusing to eat. These are just to name a FEW. I actually have a 5 page list, a long with videos taken that I will not be posting on the blog for privacy purposes but have been shown to doctors. To say the least something was seriously wrong.
In the midst of all this I kept having a nagging feeling that my daughters behaviors and all the sicknesses we had had did not add up. I had mentioned something to my mom along the lines of "why me?!" All this stress a long with moving, and being sick and now my daughter obviously has some serious issues! Nobody but Justin or I had seen the severe crazy behaviors (literally developed to that extremity within days) so I decided to facetime with my mom because she had just seen Scarlett weeks earlier in Utah and could not believe that things had changed so drastically. To say the least my mom (who was apprehensive about what I was describing) was shocked, sad and terrified after she had seen Scarlett on facetime. Somewhere in the days following the doc appts my mom sent me a text that she had been researching and found a rare disease called P.A.N.D.A..S and that I needed to look it up immediately! I had never heard of it. Here is what I read on it:
What is PANDAS?
The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.
When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of
PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).
The acute onset means a Y-BOCS (Yale Brown Obsessive-Compulsive Scale) score of >20 and or a Chronic Tic Disorder YGTSS (Yale Global Tic Severity Scale) often with multiple tics. See Diagnostics Page. Below is the symptom criteria for PANDAS. Additional symptoms, such as severely restricted food intake, may also occur.
PANDAS has an encephalitic-like onset. Some childrens’ onsets are clearly debilitating and they become near catatonic and homebound. Other children can function at school and then fall apart at home for hours on end. BUT IT IS CLEAR – THE FORMERLY NORMALLY FUNCTIONING CHILD IS GONE.
PANDAS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally we have seen a myriad of other symptoms will intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur.
PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmaphoresis.
HOLY CRAP! Right when I read this I knew this is what it was. I was 100% confident. Thank goodness for mom and grandmas inuition...and apparently my aunt in California who helped to find it as well. This had to be it. I started researching how to cure it, how to treat it. I read that a prophylactic antibiotic needed to be used to temporarily help the symptoms to go away and treat the certain strain of bacteria. So I called Pediatrican B. I explained what I had researched and thought it was, and that I needed a different antibiotic. He listened to me, and agreed that from what he observed and what I had described that this could indeed be a rare case of PANDAS. I quickly picked up the penicillin. Her behaviors were so severe in this period that we literally were stuck in the house. In the midst of this Sienna is overly clingy, whiny and I am a mess. On top of all the extreme behavioral changes Scarlett's TICs had taken a turn for the worse. If I was in public at all she just couldn't control her face. It was terrifying as a mom to watch this. My beautiful smiling daughter to something that was obvioulsy very WRONG. People were staring. I was sad for her. She would make yelling noises and growl and hiss at people. It was so scary. That night I gave her one dose of the penicillin. An hour after giving it to her that night she had a TIC "episode". We were laying in bed together and she couldn't stop with her tongue coming out and "licking" the air with these strange noises and faces, and then whining about germs in her throat and bed. I rubbed her back while she did the repetetive TIC over and over and over. I cried and my heart was breaking. While I was laying with her, Justin was in our room researching PANDAS and PANS. After Scarlett fell asleep he told me about a doctor that we could see that was a special behavioral nuerologist who specializes in PANDAS in New Jersey. I watched a few of his videos and I knew this is what was happening in our family.
The next morning I called the doctor. I was actually able to talk to him directly on the phone and explain everything. I scheduled an appointment for the following week with him. Next morning came, and I gave her another dose of the medicine. Behaviors continued throughout the day her and there. That evening another dose of penicillin. The next morning, Scarlett woke up and was SMILING. Her behaviors were milder, and that day I only saw the TICs a few times. By her 6-7th dose of penicillin her symptoms had greatly improved. I would say by 75%. My daughter was happy. She was smiling, friendly and a different kid. That is no exaggeration. After 7 days we finally had our appointment with the specialist who really (besides the TICs a few times) did not see any odd behaviors. I showed him videos and pictures and things I had documented. By this time when we saw him she was almost back to her normal self with some disturbances here and there. He scheduled for us to get blood tests done.
One of her mild facial "tics" in the doctors office
Day 2 of the worst
Her normal, happy self again;-)
My angel
10 days after the penicillin I have my daughter 90% back to herself. After blood tests, it did show that Scarlett had many abnormalitites in her results. The behavioral nuerologist pediatrician called me and we had an hour long phone conversation discussing the specifics of her results. He mentioned that Sienna also had some weakened immune system issues (had them both tested) but because she is so young there is no official "diagnosis" for her. Alot of these issues seem to be genetic, and he had ALOT of scientific mumbo-jumbo that I could barely understand. I wrote down a page but have no idea what it all means..... He officially diagnosed Scarlett with PANDAS/PANS and immediately put her on a combo of 2 different antibiotics for the next 30 days, even after her 10 days of penicillin.
Right now we are about 23 ish days out from finding out about PANDAS and I can already see the impact it has had on me, my husband and our family. My strength as a mother, wife and my faith has been increased dramatically. From here only time will tell how this will go for us with Scarlett's health. Summer is approaching, which means less chance of my girls getting strep, so less behavioral changes. Antibiotics are only a temporary treatment.
We are really hoping that this turns out for the best, because it is treatable. We are so blessed and thankful that through alot of prayer, and research between family and my husband and I we were able to figure this out and find a specialist right here in New Jersey studying this. Since her diagnosis, now we know how to handle it and move forward. After the inital onset of being sick the bacteria has affected the brain (in simple terms) so it takes 4-6 weeks for the behaviors to go away completely. We are in our 4th week, and I have seen a 90% improvement from the week from "hell" where we were literally stuck at home because of how scary this was. I still see some things there, but for the most part I finally am seeing my happy 3 year old, and I am grateful every single day that she is coming back to us! As we go through this process I will continue to blog about it. It is just such a huge long subject that it is very hard to write it all down! The PANDAS specialist told us in our specific town he has several cases of this here that are new this year. It is such a rare and new disease that not alot of research has been done on it. Every case is being studied and researched, and every situation is different. I have been reading alot about the misdiagnosis of Autistic children that actually had PANDAS or PANS the entire time. This worries and scares me since in New Jersey alone the rate of "autistic" children has increased by 30% within the past few years. The average onset of this is 6 years old, so being a 3 year old with it is very rare. I am just so grateful that things are already so much better...thank heavens for antibiotics and modern medicine! Here are some more websites if you would like to read more about it (please watch the last youtube video) :
If you have any specific questions, please feel free to comment. I am SO grateful to be a mother and I am so grateful for both of my beautiful daughters and every part of their personalities. I would not change either of them for the world, and part of them. I am also very grateful that we have a doctor who specializes in this just an hour away....he has people from all over the country come to him for this rare disease. Quality medical care is so important with certain kids that need it! My attitude towards this is positive, and this is treatable and will be manageable, but not easy.We will battle this with faith, prayer, hope and mother/father's intuition;-).
Scarlett and I on our "beach date"
Sienna, my other sweet angel.
